Data trusts might provide a way for results of medical research to be shared in a controlled manner that will benefit pharmaceutical research and society. Recently I read about one of the world's biggest pharmaceutical companies experiencing "bad press" about not sharing medical research results. It occurred to me that data trusts could be an answer to this problem in future.
A data trust could be in the form of a legal trust holding rights in data. Trustees of a data trust are responsible for deciding when and with whom to share the data rights, as well as what data rights are shared and whether such sharing will be to the benefit of the public and organisations using the data. A data trustee is effectively a new profession. If a pharmaceutical company were to use a data trust to hold data rights of particular medical research results then the data trust would be a mechanism enabling the data rights to be appropriately shared and used. Independent data trustees would be accountable for how the data rights were shared and used.
One of the world’s biggest drugs companies has been accused of deliberately hiding evidence that could potentially have prevented people developing Alzheimer’s